Tessa Reed Shea's Documentary: Busy

Saturday, November 26, 2011

Busy

Well it has been a busy few days and Mommy had thought she posted but something is malfunctioning with her cell phone posts. I hope everyone has enjoyed their thanksgiving holiday! I was ok on thanksgiving but gave Mommy and Daddy a really hard time that night. Mommy held me for most of the night and I have been battling a fever ever since.

Daddy and Brody hit the slopes on friday with the neighbors and had a lot of fun. Next time Daddy will wear skis and tackle the big slopes with Brody.

That evening Mommy, Daddy and Brody went over a friends while I stayed home with Marsha. I had a pretty good day and evening which made everyone happy.

Today I got to say hello to my Auntie Caryn who is visiting from Texas for her baby shower. She took lots of photos which you may get to see tomorrow. Mommy took a few this morning during and after my nebulizer treatment. It totally relaxed me and Mommy was able to get a good picture. you can see how much I am growing in my second photo.

I stayed home today again with Marsha while everyone went to the baby shower for Ryder. We all can't want for baby Ryder to arrive here from Korea. It will be such an exciting time for everyone!

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My Story

I was born on January 18, 2011 and weighed 6lbs 14.5 oz and was 19.75" long. I was born with lots of fluid in me and no desire to suck or swallow. It wasn't until 12 hours after I was born that doctors started to worry about me. I had an MRI, CT scan and EEG and they discovered severe damage to the thalamus in my brain and diffuse white matter.

I spent a month at the Children's Hospital NICU and they sent me home with a nasal gastric (NG) tube because I still couldn't eat. I started to make a little progress drinking from a bottle at home (10 mls at a time) and then I got the flu and ended up back at the hospital.

It seemed like just after the flu I started arching much more than I had before and lost all desire to want to eat with a bottle. My arching episodes got much worse and Mommy and Daddy thought I had reflux or maybe a stomach ulcer from my NG tube. We scheduled surgery for a stomach feeding tube (G-tube), but ended up at the emergency room because I was arching so much and started to have trouble breathing.

When we checked into the hospital for the 3rd time, they gave me morphine to see if it would take away any pain I might be having from my NG tube. When that didn't stop my arching, they knew something else was wrong. They hooked me up to an EEG and found out that I was have lots of seizures, abnormal brain activity and something called hypsarrhythmia.

The doctors left the EEG on for several days to study my brain activity and my brain activity was something most doctors at the hospital don't see very often. That is when they diagnosed me with Ohtahara Syndrome and also a form of West Syndrome. The seizures are a side effect from my brain injury and my prognosis is not very good. Mommy and Daddy from the advice of some amazing doctors, have decided to bring me home to spend time with my family and experience as much love as I possible can.